Be the Match: a volunteer list for bone marrow donation

post by Evan Rysdam · 2019-10-27T05:44:48.361Z · score: 24 (14 votes) · EA · GW · 29 comments

Note: Be the Match is only available for people living in the United States.

Be the Match is a sign-up list for people who would be willing to donate life-saving bone marrow to a compatible patient. The way it works is that once you sign up, you are mailed a swab kit which you rub on the inside of your cheek and send back. Be the Match keeps your data on file, and whenever somebody needs a bone marrow transplant, they scan through their database to find compatible donors. If it's you, you get a call.

The sign-up process takes maybe an hour including the time spent mailing the package. Be the Match estimates that the entire donation process, if it ever occurs, takes 20-30 hours spread out over 4-6 weeks, including phone calls, medical appointments, and the donation itself.

Let's say the average person reading this post can make $25-$50 an hour. That means they are spending the dollar equivalent of $500-$1500 to save one life, in the event that they are called upon to donate. I'm relatively new here, but my understanding is that that's reasonably competitive. It also takes the form of hours instead of dollars, which might make it more viable for some folks (and maybe less viable for others).

You can sign up here. Happy donating!

Note: If you are 45 or older, then there is a $100 registration fee (otherwise, it's free).

Note #2: Down below [EA · GW], user HaukeHillebrandt has pointed out a reason why this might not be as great as it sounds, and user MichaelStJules has pointed out a similar reason [EA · GW] (see third bullet point of the linked comment).

29 comments

Comments sorted by top scores.

comment by Jorgen_Ljones · 2019-10-28T17:52:40.223Z · score: 24 (9 votes) · EA · GW

FWIW, I was a stem cell donor in March this year.

Here in Norway you can sign up after donating blood at least three times, they take a couple of extra blood samples for the stem cell registry and then you wait for the call. Most people on the list are never matched with anyone. I understand that the registry is an international collaboration, so the patient could have very well (most likely) been from a different country than Norway. I don't know where the patient lives that received my stem cells.

Here's a database of countries and agencies that take part in this international collaboration: https://share.wmda.info/display/WMDAREG/Database#/

I donated through blood, which means I was first treated with injections of growth factors in the four days leading ut to the blood harvesting to provoke the release of stem cells from the bone marrow into the blood. This induce flu like symptoms with neck and back pain as the bone marrow swells up. The first injection my doctor gave me, but the rest I took at home after observing how it was done. On the day of the harvest I went to the hospital and spent about 3h in a bed hooked up to an apheresis machine which takes my blood out one arm, separated out the stem cells and puts the rest of the blood in the other arm.

The day of the harvest was a Monday, and I started feeling sick (the induced pseudo-flu) Friday evening with significant back pain on Saturday, Sunday and Monday, but I was back to work the second half of Tuesday.

In total I think I spent a total of ~30 hours of productive hours (including Sat and Sun), while the Norwegian Bone Marrow Donor Registry refunded my workplace for the 15 hours I was on leave for this. I didn't pay anything in the end, nor got compensated anything else than my normal salary for the hours I was on leave. Some of this time I spent on low productive things like reading books and the rest I spend relaxing, playing computer games or sleeping.

I don't think this was the most effective thing I've done in my life, and I'm unsure it was even better than the expected value of my hours, but I'm confident that was higher than average.

Since I already was a blood donor it was very low effort to registrer for stem cell donation, and when I was a match, the relevant calculation on my part was the time I was going to spend, not the time all non-matched donors already had spent.

I also value that I learned some interesting things about stem cell treatment and stem cell donation in particular, and I enjoyed the experience and the story I can tell afterwards.

comment by harald · 2019-10-30T18:24:07.057Z · score: 23 (8 votes) · EA · GW

Thanks for posting about this. I spent some time looking into bone marrow transplants a few years ago when a friend needed one.

I'm on the register, and I would donate if asked to. This is definitely at least partly driven by my personal experiences, but aside from that I suspect that for anyone who's not self-employed or doing direct work (or studying) it probably makes sense to join the register from a cost-effectiveness point of view.

Some useful considerations, at least some of which haven't already been mentioned by other commenters:

  • If you're male and 16-30 your chance of donating at some point is around 1 in 170.
  • In general, around 90% of donations are done though peripheral blood stem cell collection - as per Jorgen_Ljones' experience [EA · GW]. This can take a few days to recover from, but isn't too invasive. The other 10% is through direct bone marrow collection, and requires general anesthesia. I think the trade-offs are quite different here for people who are self-employed or doing direct impact vs those working in a non-EA job, or earning to give. Personally I'm on the register and expect that I would be able to get some paid time off from work if I were asked to donate.
  • In general, information sharing between the registers in various countries (e.g. Be The Match in US, Anthony Nolan in UK) is pretty good, and they tend to operate with volunteers who can transport bone marrow across countries when required.
  • Only 60% of transplant recipients receive bone marrow from someone who is a 'perfect match'. Those other 40% lead a much higher risk of complications. So contributing to the register doesn't just lead to more transplants, but also to better transplants.
  • I don't think the opportunity cost of signing up is an hour of productive time, at least in the UK. It's a 10m online form, a cheek swab, and walking past a post box.

Other data points from various sources that would be useful for a cost-effectiveness estimate on this:

I've considered doing a cost-effectiveness estimate on this but haven't made time for it for various reasons; please let me know if you'd be interested in seeing it written up or writing it up. I have more info I can share which was shared with me privately.

comment by HaukeHillebrandt · 2019-10-30T23:23:56.392Z · score: 12 (4 votes) · EA · GW

This paper here might have some useful info for a cost-effectiveness analysis (https://link.springer.com/article/10.1007/s11166-015-9222-7) see Table 11 "Benefits and Costs to World Population of 1,000 Additional Adult Registrants"

Lives Saved

Caucasian 0.00669

Black 0.00668

Asian 0.01940

U.S. Hispanic 0.00538

You'd need ~50k to 100k people to spend 10 mins each to save one life.

comment by MichaelStJules · 2019-10-27T18:23:31.954Z · score: 14 (7 votes) · EA · GW

I don't get all the downvotes. Even if this turns out to not be very cost-effective (although maybe the post should be edited to highlight the initially missed considerations), it is helpful for us to see why as something to learn from.

It also makes the forum seem unfriendly to newcomers.

comment by aarongertler · 2019-11-06T02:15:50.238Z · score: 2 (1 votes) · EA · GW

What do you mean by "all the downvotes"? The post has 24 karma on 14 votes. The highest-karma posts on the Forum usually come in at 2-2.5 karma/vote. If we assume those posts have close to zero downvotes, that points to this post (1.7 karma/vote) having... two downvotes, probably?

comment by MichaelStJules · 2019-11-06T03:47:39.780Z · score: 4 (3 votes) · EA · GW

The post was in the negative for a bit, I think the day that it was posted or maybe the next day.

comment by Evan Rysdam · 2019-10-27T18:29:37.400Z · score: 2 (2 votes) · EA · GW

Thank you for these words.

comment by Sanjay · 2019-10-27T11:24:34.368Z · score: 14 (6 votes) · EA · GW

I considered joining the UK equivalent of this some years ago. I opted not to:

  • the website suggested that I should plan on the assumption that I may experience serious fatigue for 5 days after donating
  • in order to do this I would need to inform my employer that I was on the list
  • I already had a reputation at this stage for having an "extreme" interest in charitable activity

I had to weigh up definitely strengthening my employer's impression that I cared more about altruistic endeavours than my career against a 1-in-800 probability of doing something of value.

comment by HaukeHillebrandt · 2019-10-27T12:17:28.350Z · score: 7 (4 votes) · EA · GW

We should probably also add the some 799 hours of those not selected * $25 per hour opportunity cost, to the cost per life saved calculation above.

comment by MichaelStJules · 2019-10-27T17:01:59.571Z · score: 1 (1 votes) · EA · GW

Ah, did you mean the time the person who would have donated in your place saves if you donate in their place? That's only $25-$50 per hour for 20-30 hours (+ recovery) for one person, not 799. The other 798 won't save any time, since nothing changes for them.

comment by HaukeHillebrandt · 2019-10-27T17:56:04.852Z · score: 2 (1 votes) · EA · GW

I meant that, based on Sanjay's info, that only 1 out of 800 people are a match for anyone, and they will spend around 1 hour to fill in forms, do the swap (which in itself creates costs etc.), this should be included in a full costing analysis of the cost per death averted figure and make it no longer competitive with other priority interventions.

comment by HaukeHillebrandt · 2019-10-27T18:25:35.602Z · score: 3 (2 votes) · EA · GW

Cost-effectiveness analysis looking at bone marrow transplantation often include all these costs (e.g. "The median cost of the first 6 months of care including donor identification, marrow collection, patient hospitalization for transplantation and all outpatient medications and readmissions through 6 months postmarrow infusion was $178,500" https://ashpublications.org/blood/article/92/11/4047/133908/The-Costs-and-Cost-Effectiveness-of-Unrelated ).

Here's another more recent related study that similarly suggests that bone marrow transplantation is quite expensive to treat even for advanced economy standards:

https://www.ncbi.nlm.nih.gov/pubmed/20348004

Note that I haven't looked into this very deeply, and this this just a hunch.

Also, again, I agree that sometimes, it can be effective to improve a generally not very effective intervention.

comment by MichaelStJules · 2019-10-28T01:59:37.090Z · score: 1 (1 votes) · EA · GW

I'm not sure these costs (the $170,000+) should be included, or if they are, they may need to be weighed down significantly. We're not looking at the cost-effectiveness of implementing such a program; we're looking at the cost-effectiveness of an extra person signing up and possibly an extra donation (with small probability). If you want to include the $170,000+, you should ask what else would have been done with that money, because it's not ours to use.

The organization gets it funding from the government and donations.

comment by HaukeHillebrandt · 2019-10-28T09:58:26.220Z · score: 10 (3 votes) · EA · GW

As I said that in my previous reply, I do agree with you that sometimes it can be very effective to improve a generally not very cost-effective intervention such as this. I also agree that one's marginal time might not be very valuable (yet not zero). So I do agree that in theory this could be a cost-effective intervention.

However, I think the marginal cost per death averted figure above of spreading this meme were overstated for two reasons:

1. Crucially, on the marginal costs:

Assume that including cognitive overhead that it takes roughly an hour for an EA to do the swap (e.g. using the swap, mailing it etc.) and the marginal value of my time on Sunday afternoon when I would otherwise just do something pointless is $10 (this is conservative see http://globalprioritiesproject.org/wp-content/uploads/2015/03/NeutralHours.pdf ).

This buys us a 1 in 800, or 0.125% chance of being a match.

This means we need to convince 800 EAs to spend $10 to find a match. The cost is $8000. In other words, your own probability of saving a life is 1 in 800 but you have to pay $10 for it.

Technically, but less crucially, we also need to add that one EA will actually have to go through the donation process for this to have an effect. 20 hours * $10 = $200. If you're unwilling to accept a 1 in 800 probability of going through the process, there'll be no benefit. For one person that means that we need to add 1 in 800 probability of paying $200 (or 25 cents). So the total for one person comes to $10.25.

We're also subsidizing expensive health care, spreading the meme that this is good, and perhaps in the process displacing more effective treatment, which can do net harm (see https://www.nice.org.uk/news/blog/carrying-nice-over-the-threshold ).

2. Also less crucially on the benefits side: As shown in the papers above the QALYs gained from might not add up to a "whole life saved", which can be seen by their measure "per additional treatment success' ("For patients at standard risk for disease, the treatment success rate was 80.3% for BMT recipients" [...] For patients with high-risk disease, the treatment success rate was 23.5% for BMT recipients"). Then, even after successful treatment, cancers often come back, which reduces the cost-effectiveness ("only 62% of patients survived the first year post-BMT, 98.5% of patients alive after 6 years survived at least another year. Almost 1/3 (31%) of the deaths in long-term survivors resulted from causes unrelated to transplantation or relapse. " see https://www.ncbi.nlm.nih.gov/pubmed/16545726 ).

comment by harald · 2019-10-30T18:38:48.357Z · score: 12 (6 votes) · EA · GW

Worth noting (some of these are also mentioned in my other comment [EA · GW], with sources there):

1. If you're male and 16-30 (a significant proportion of EAs), the chance of being asked to donate is more like 1 in 200.

2. I'd say the time cost of registering is closer to 15 minutes than an hour. Personally I filled in the form at work during my lunch break, and spent a few minutes doing the cheek swab at home.

3. It's not clear that not doing a transplant would be cheaper for healthcare systems than doing the transplant. In general, complications for conditions which would require a transplant can be expensive to treat, and healthcare systems like the NHS would treat them. See the linked Guardian article in my other comment which suggests that transplants could actually be saving the NHS money vs treating the symptoms. Also see the other link that suggests UK transplants from UK donors are much cheaper than UK transplants from foreign donors (assuming these transplants would be happening anyway).

4. I do think health concerns to donors need to be taken into consideration. Most people (90%) can donate in a way similar to blood donation, but 10% undergo general anesthesia. This isn't risk-free, though generally the criteria which filter for suitable donors upon registering exclude people who would be at high risk when undergoing general anesthesia.

comment by MichaelStJules · 2019-10-27T18:31:14.509Z · score: 1 (1 votes) · EA · GW

If you're chosen to donate, someone else is not, so they save time, although overall, more time is wasted if you don't sign up, because the organization will have to deal with an extra potential donor. Roughly one more person will be signed up in expectation if you sign up, unless you think you have an important effect on others. You're not wasting the time of anyone else who signed up if you sign up, since they were already going to pay that cost.

If you're not chosen to donate, you'll waste your own time, and the time of the organization.

Overall, though, if you're EA-minded, your time is probably worth much more than the average person who signed up, and I think this should dominate time considerations.

comment by MichaelStJules · 2019-10-27T15:58:22.601Z · score: 1 (1 votes) · EA · GW

Unless we think they'd be doing something particularly valuable with that lost time, I probably wouldn't. That these people are signing up at all is a sign that they do care about others significantly, but it's not a sign that they care about cost-effectiveness.

EDIT: Also, you have approximately 0 effect on whether the others choose to sign up, so you have no control over these opportunity costs.

comment by jmj8778 · 2019-10-28T01:04:36.967Z · score: 11 (8 votes) · EA · GW

As an FYI, the expected benefit here is largely dependent on your ethnicity, and to a lesser extent, age:

1. White Americans/Europeans have very strong chances of finding a match (or many matches), so registering with that background means that you're likely less unique to the existing donor pool. Replaceability can often be high with this sort of background.

2. Those with other ethnic backgrounds can have much more difficulty finding matches. The less common your background (e.g., if you are mixed race, or from a less common background as found in the US, UK, and Germany (the countries which have the most donors)), the more likely it is that you'll be providing a donor where there is not otherwise a good candidate to be found, and thus actually sort of 'saving a life'.

3. Males under the age of 26 are typically considered the best donors, so you should more strongly consider this if you're a young, and/or male (although certainly many donors are used that don't match that criteria). If you're over 65, have a blood disorder, have received radiation, etc. you'll likely be told you're ineligible to donate to non-relatives.

comment by michaelchen · 2019-10-28T00:58:48.004Z · score: 9 (4 votes) · EA · GW

Some additional statistics that might be helpful for determining the counterfactual impact:

  • “1 in 300 will be selected as the best possible donor for a patient. These potential donors will have an information session with their donor center representative to learn more about the donation process. Due to changes in the patient's condition, not all donors who are selected as the best match will donate.”¹
  • “About 1 in 430 members will actually donate.”¹
  • “Because of the continuing growth and increasing ethnic diversity of the Be The Match Registry, an overwhelming percentage of patients who need an unrelated donor transplant will have a suitably matched, available donor or a CBU with an adequate cell dose on the Be The Match Registry. A 2014 study found that depending on a searching patient's ethnic background, this match likelihood is between 91-99%.”⁴
  • “about 93 percent of Caucasians will find a donor through the registry, Chell says, compared with 73 percent of Asian Americans and 67 percent of African Americans.”²
  • https://bethematch.org/transplant-basics/matching-patients-with-donors/how-does-a-patients-ethnic-background-affect-matching/ has some stats on the chance that someone of a certain ethnic background will find a matched donor (presumably of the same race). Does increased compatibility improve outcomes, or just the chance that the transplant will work out?
  • “Some 6,000 people donate bone marrow and stem cells for transplant each year through Be the Match, a Minneapolis-based registry that connects donors to ailing recipients. But there is an equal number of people who sign up to donate but decline or don’t respond when actually asked to do so. This 50-50 “commitment rate” has frustrated leaders of the National Marrow Donor Program, which operates the registry, and caused it to revamp the way it recruits donors as of next year.”³

¹ https://bethematch.org/support-the-cause/donate-bone-marrow/join-the-marrow-registry/likelihood-you-will-donate/
² https://www.washingtonpost.com/national/health-science/race-matters-when-a-patient-needs-a-stem-cell-or-marrow-transplant/2013/08/05/51abdf04-f2d9-11e2-ae43-b31dc363c3bf_story.html
³ http://www.startribune.com/being-the-match-but-not-the-donor/466167913/
https://bethematchclinical.org/transplant-therapy-and-donor-matching/donor-or-cord-blood-search-process/likelihood-of-finding-a-match/

comment by Khorton · 2019-10-27T09:03:51.099Z · score: 6 (5 votes) · EA · GW

Here's a UK equivalent. They're especially looking for men under 30.

https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells

comment by edoarad · 2019-10-27T05:52:06.701Z · score: 5 (4 votes) · EA · GW

Interesting. Should be noted that this is for people living in the US.

comment by Evan Rysdam · 2019-10-27T06:23:38.769Z · score: 1 (1 votes) · EA · GW

Good point. I'll add that to the post.

comment by aarongertler · 2019-11-06T02:25:07.796Z · score: 4 (2 votes) · EA · GW

While I don't have anything to add to other commentators on the cost-effectiveness estimate, I like this post for several reasons:

  • In addition to the practical impact, thinking about bone marrow donation can be really good practice for figuring out the return on someone's time and energy (I could picture this being a trial task for an EA research org)
  • It seems to me as though EA will best thrive if members try to be especially moral even beyond their careers and donations.
    • This doesn't mean trying to achieve moral sainthood or enlightenment, but it does seem... coherent, I suppose, for people in EA to be the sorts of people who will clean up litter when they see it, help someone up who's fallen, be polite to store employees, and at least consider giving blood or bone marrow (assuming that the calculations work out).
    • A community full of people who are in the habit of "doing the right thing" in small ways seems like it has a better chance of lasting for a long time, to the general satisfaction of its members. (Getting good at noticing when something is wrong and needs correction also has highly EA-relevant implications, e.g. around community health and taking action when someone's behavior is causing a lot of disvalue.)
comment by MichaelStJules · 2019-10-27T06:16:26.159Z · score: 4 (4 votes) · EA · GW

Yes, $1500 would be pretty competitive with GiveWell's top charities, and possibly better.

A few comments:

  • Maybe some workplaces would consider giving you extra paid time off to do this. If not, you can use sick/personal days. If you're earning to give or otherwise don't do direct work, then the lost time might not be much of a loss at all.
  • Does the time estimate include recovery time in bed?
  • The estimate doesn't really consider the counterfactual. You'd want to know the probability that the person you would have helped (or another person in their place) would have died had you not donated. That probability is not 1, because they might have been saved by someone else instead, and you would want to adjust the cost-effectiveness based on this probability. Maybe another way of putting it is this: what percentage of people who sign up for this actually end up donating? This won't give you the right probability I mentioned just before, but it will tell you something about it: if almost everyone who signs up ends up donating, then the probability that an extra person gets a donation if you donate is also close to 1.
comment by Evan Rysdam · 2019-10-27T06:44:00.453Z · score: 5 (2 votes) · EA · GW

For the time estimate question, this video seems to be saying that donation takes 3-4 hours and recovery is maybe 1 hour. The website gives more information:

Side effects may include back pain, fatigue, headache or bruising for a few days or weeks.

The counterfactual comparison is a good point. I couldn't find any information about it on the website, but Wikipedia reports:

Because the odds that two random individuals are HLA matched exceeds one in 20,000, a registry's success depends on a large number of volunteer donors.

Wikipedia also reports that the Be the Match registry has about 16 million members. This means that an average patient might have 800 matches, which bodes poorly for the marginal benefit of joining the list.

comment by michaelchen · 2019-10-28T01:26:46.657Z · score: 7 (2 votes) · EA · GW

The probability of being an HLA match might be a lot lower than 1/20,000. Say that half the potential 16,000,000 donors would renege on donating if they were called, so we actually have 8,000,000 available members. A 1 in 20,000 chance implies that the chance that a given patient has no matches would be , when in reality the chance of having a match (probably with a donor who is willing to donate?) is at least 0.01. Maybe 1 in 2 million is more reasonable?

comment by jmj8778 · 2019-11-13T07:03:16.207Z · score: 1 (1 votes) · EA · GW
That probability is not 1, because they might have been saved by someone else instead, and you would want to adjust the cost-effectiveness based on this probability.

In many, many instances, a donation extends a life in expectation only a small amount vs. not receiving a donation. It isn't "saving a life" in many cases with donation, and for many it's a positive update for their condition, but not a "necessity".

comment by Jemma · 2019-10-27T10:08:11.140Z · score: 3 (3 votes) · EA · GW

Australian equivalent: https://www.abmdr.org.au/ (They say on this one that you could be asked to donate to someone anywhere in the world, as it's part of a worldwide network.)

I signed up for this a couple of months ago. Pretty simple process, probably the same one that's described above. My main worry was not dropping more than 1/4 of the swabs! (They need three, but give you four in case you drop one as it's invalid if the tip has touched any surface except the inside of your mouth.)

comment by MichaelStJules · 2019-10-27T18:45:11.223Z · score: 1 (1 votes) · EA · GW

If each of those (on average) 800 matches were only 1% likely to donate if chosen, then the probability that none of them would donate would be very small, ~0.03%. The counterfactual expected impact would be much lower than just 1/800; it would be scaled down by a factor of 0.0003.

However, if each were only 0.1% likely to donate if chosen, then you're close to a 50% probability of saving an extra life (or helping an extra person) than would have been saved (helped) otherwise, which would actually be very cost-effective.